At the beginning of the year, I wrote a blog post saying that 2018 was proving to be a bit of a bitch. At that point, I was suffering with extreme vomiting and was, in general, really unwell, but I didn’t really know what was wrong, although I has my suspicions which later proved to be correct.
We are now in August and closer to the end of the year than we are to the beginning and honestly, 2018 has been hell. A steamy shitty pile of hell. Don’t get me wrong, there have been good points, such as being able to go up to York but for the most part, I have been incredibly unwell and have spent the majority of the year in bed or on the sofa. If I’m being honest, I don’t feel like I’ve achieved much, but then the kinder part of me kicks in and I remind myself that for a start, I’m still alive, which right now amazes me. I might not be able to work but I have re-established my blog and been nominated for two awards in the process. I’m slowly getting my name out there and doing freelance writing when I’m well enough and after being nagged by people for ages, I am semi-planning to write a book. More on that, another time.
So, what’s been happening?
After I returned from York, my health rapidly declined. Initially, I went into unexplained urine retention, my bladder was drained at my GP surgery and I went on my merry way thinking that was that. Less than 24 hours later, I went into urine retention again and ended up being fitted with a catheter for just under a week. I was lucky, in the respect that I could still feel when I needed to pee, so instead of having a bag, I was fitted with a flip flow valve. Think turning of a tap and then peeing. Everything was fine, until my urine starting by-passing the catheter and I was able to pee normally with the catheter still fitted. That’s not normal. I’m also using the term “fine” very loosely: having a catheter fitting messed with my head so much that I reached the point whereby I was watching YouTube videos on how to remove a catheter at home.
It wasn’t a case of worrying what other people thought of me, it was how it made me feel. My body does a lot of things which makes me feel like I’m losing control but this took things to a new extreme. I was really self conscious and was convinced that I constantly smelt of urine, so by the time I saw my catheter nurse, I was begging to have it removed, even if it was against medical advice. Thankfully she was in agreement and fingers crossed, my bladder has behaved since then.
A few days after the catheter drama ended, I found out that the probable reason behind the retention was a kidney infection, the first of three in as many weeks.
I ended up in out of hours hospital due to a gastroparesis flare, which triggered cyclical vomiting, so that I could have an injection of intra-musclular anti sickness. This episode finally convinced my GP and nurses at my GP surgery that I should be trained to inject the anti-sickness myself. Turns out, injecting myself is very different to injecting a grapefruit.
Just over a month ago, I had an appointment with Dr Hakim, in London, who recommended, amongst various other things, that I should have a blood test to check my cortisol levels. I had said blood tests and the results came back, causing a bit of drama. Normal cortisol levels at 9am, when I had the blood tests, should be over 400. Mine were 87. Since finding this out, just over a week ago, my health has worsened again. I’ve been sleeping 18+ hours a day, been very weak with awful muscle pain, dizzy, confused and generally not okay. These symptoms aren’t unusual for me, but the extreme nature of them over the past week has been scary and I have a lot of gaps in my memory because I’ve been too ill to process what has been happening.
Yesterday I had an appointment at the endocrinology department at one of the Oxford. They ran more tests and said that they are 99% sure that I had Addison’s Disease . Even when I was having the final test (awful experience, having an injection which makes you want to vomit) I was in slight denial. It was only when my wonderful endo nurse sat down with me, with paperwork that I had to sign, which was passed onto the ambulance service, to say that if they received a call about me, it had to be treated as high risk, that I started to actually realise how serious was.
I don’t think anyone was expecting that just a few hours later, my mum would be calling 999, because I was experiencing my first adrenal crisis. Again, I have a lot of memory gaps because I was too ill to process what was going on. I know that I was being very sick and the anti-sickness injection that I administered did absolutely nothing to stop the sickness. I know that I walked out of the house vomiting, which would have been a lovely sight for any nosy neighbours on a Friday afternoon and I know that I made my grand entrance to A&E by vomiting everywhere. Whatever anti-sickness they gave me was like liquid gold and instantly stopped the vomming but a good few hours passed before I was fully aware of my surroundings and what was happening.
Yesterday was a terrifying experience and I know that managing gastroparesis and Addison’s is going to be a challenge, but I have a good care plan in place and a lot of medical support to make sure this is controlled as much as possible.
I don’t think I’ve fully processed everything from the past few weeks, I suspect it will take some time and it will be something that I’ll be dealing with in therapy for the foreseeable future but that’s okay. Right now, I’m just hoping for a stable few weeks because I’m physically and emotionally drained, as is my mum.
All that remains for me to say is a huge thank you to everyone who continues to support me on this crazy journey people call life. It’s bloody tough!